_A Primer for People Waiting for a Liver Transplant & Their Caregivers

This section is part of D's story.

I had a long journey thru very deep depths of cirrhosis. I spent a lot of time in the hospital or rehab due to extended periods of Hepatic Encephalopathy (HE), sky rocketing blood glucose levels (Type II Diabetes), e Coli from some unknown source and a variety of other problems. Only after the depths of negative health incidents did I really get serious about getting an organ transplant. I switched doctors as my old ones had seen me thru my drinking years and apparently did not think I would be alive long enough to go thru the process.

I'm here because I want to help people with all types of organ transplants. I have had a liver transplant but share many common problems with other type of organ transplants. I really enjoy spreading the word about organ transplantation and trying to shatter myths. I won't sugar coat anything, especially the causes of my own disease.

I have been involved with several groups at my transplant center. One group is for the people waiting for their transplant and the other is for their caregivers. I also believe in the SMART Recovery® - Self Help for Addiction & Alcohol Abuse program and help facilitate a closed group at my transplant center. I go to share my experience throughout the process and answer any group questions. Two of the groups meet concurrently, but separately to address the specific needs of the two groups. Sometimes there are joint meetings for topics that are relevant to both groups like a surgeon’s presentation on the actual operation. You should look to see if you have similar groups available at your center or your community. Talk to your social worker to see what is available.

I often relate the following advice to the people I meet to prepare and endure the waiting period:

Remember that you are a vital part of the transplant team—all of your doctors, nurses, social workers AND YOU are all working towards a common goal. Become a trusted member by demonstrating compliance to treatment and by gaining knowledge about everything along the way. Use your transplant team well—be brutally honest about symptoms, emotions and drug reactions—they really know what they are doing and can help when you need it. Always, always, always do everything that your team tells you to do. Make sure to keep yourself or your loved one on schedule with ALL prescribed meds—it really, really matters!

Encourage yourself or your loved one to get in the best physical shape possible—it helps pass the time and will pay-off in recovery time. Remember to consult with your team about what type and how much exercise you or your loved one should get as well as your progress. I think your team will provide lots of encouragement!

Don't get caught up worrying about your place on the list-it will happen before you know it. All of the different UNOS “lists” are really just a pool of people waiting for an organ. Only when an organ becomes available do individuals form a list of potential candidates to receive that organ. UNOS rules dictate who actually receives the organ based on (and I’m not sure of the sequence here) how good of a match the donor is to the recipient, geographical proximity, how urgent the candidate needs to be transplanted, and sometimes how long a candidate has been waiting for an organ. Talk to your team to find out specifics for your type of organ(s).

Prepare all the necessary documents, i.e. HIPAA release forms, advanced health care directive (Living Will), power of attorney-health care, organ and tissue donor registration and your will. This is for both your and your caregiver’s peace of mind. Your caregivers need to have access to your medical information to facilitate interaction with your team.

If you are working and need to stop, see if your employer has short and long term disability insurance. You’ll need to complete the necessary applications for benefits. Look at COBRA coverage in your current health insurance for coverage. COBRA costs more than you have been paying but ensures you still have the same coverage. Check your spouse’s employer for health then try to get on their health insurance. The key is to provide continuous coverage so you don’t run into issues with “pre-existing conditions” until health reform legislation eliminates this barrier to having health insurance at an affordable rate.

File for Social Security Disability Insurance (SSDI) as soon as possible. Some people experience problems getting approval so you need to be insistent with the appeal process if necessary. My own application sailed through on the first application, probably due to how sick I was at the time. Make sure you complete every little requirement and provide all information required. Get copies of all of medical records pertaining to your current condition. Remember there is a six-month wait between the date you become eligible for SSDI (disability date) and your first benefit payment. Your disability date is when you or your loved one became disabled, not the date of application. You may not be able to get “retroactive” payments if your disability date is longer than six months previous to your application. Medicare coverage won’t kick in for two years from the eligibility date (the later of the date of disability or six months before the date of application) or the date that you reach your normal SSA retirement date..

Before your Medicare benefits start select a Medicare Part D plan that has your medications in their drug formulary. Try to find additional coverage in a Medicare Supplement Plan that provides drug benefits when you hit the “donut hole”. My Medicare coverage did not start until after my transplant so I don’t know if I would have reached the donut hole with my pre-transplant meds.